HER2 Support Group Forums - View Single Post - Has anyone had success with herceptin alone?

Barbara H. · 09-25-2010, 08:20 PM

Hi Tricia,
I did not find Navelbine to be an easy drug, but I knew at the time that you had experienced success with it. I was diagnosed in 98 and went 6 years before I developed mets just about everywhere. I achieved NED quickly with Herceptin alone. My daughter was married two months after I was diagnosed, and my oncologist at the time wanted to make my life as easy as possible. I was able to continue my teaching and my quality of life. Unfortunately, after 1 1/2 years I developed bone mets and that is when I added Navelbine for about 9 months. At that point I had to have brain surgery for a suspected recurrence which turned out to be radiation necrosis. I eventually went off everything to become eligible for a weekly phase 1 TDM-1 trial that I started in Sept. 2007. That drug was a total miracle for me. My bone pain disappeared in two days and the treatment kept me NED for the two years I was on it. Unfortunately, and am currently the only one to develop a side effect of lung inflammation, and I had to go off of it in spite of the fact that it was still working. I have been on Herceptin/Tykerb for the past year and find it an easy combination. I continue to be NED and virtually have no side effects. I think that you should try Herceptin alone. If your markers begin to rise, perhaps you could add Tykerb. Quality of life is important, and I hope that Herceptin without Navelbine will work for you. However, Herceptin alone can also cause lung issues so that will need to be monitored. It is really unfortunate that the FDA denied TDM-1 and that it is not an option for you.

I wish you all the best and hope that Herceptin alone works for you.

Kind regards,
Barbara H.

09-25-2010, 08:20 PM	#2
Barbara H. Senior Member Join Date: Sep 2005 Location: Newton, MA Posts: 951	Re: Has anyone had success with herceptin alone? Hi Tricia, I did not find Navelbine to be an easy drug, but I knew at the time that you had experienced success with it. I was diagnosed in 98 and went 6 years before I developed mets just about everywhere. I achieved NED quickly with Herceptin alone. My daughter was married two months after I was diagnosed, and my oncologist at the time wanted to make my life as easy as possible. I was able to continue my teaching and my quality of life. Unfortunately, after 1 1/2 years I developed bone mets and that is when I added Navelbine for about 9 months. At that point I had to have brain surgery for a suspected recurrence which turned out to be radiation necrosis. I eventually went off everything to become eligible for a weekly phase 1 TDM-1 trial that I started in Sept. 2007. That drug was a total miracle for me. My bone pain disappeared in two days and the treatment kept me NED for the two years I was on it. Unfortunately, and am currently the only one to develop a side effect of lung inflammation, and I had to go off of it in spite of the fact that it was still working. I have been on Herceptin/Tykerb for the past year and find it an easy combination. I continue to be NED and virtually have no side effects. I think that you should try Herceptin alone. If your markers begin to rise, perhaps you could add Tykerb. Quality of life is important, and I hope that Herceptin without Navelbine will work for you. However, Herceptin alone can also cause lung issues so that will need to be monitored. It is really unfortunate that the FDA denied TDM-1 and that it is not an option for you. I wish you all the best and hope that Herceptin alone works for you. Kind regards, Barbara H.